5 days ago
Chandler family fundraising for son's ultra-rare disease treatment
The Brief
A young Chandler boy named Marco was recently diagnosed with beta-mannosidosis.
It's an ultra-rare genetic disorder and there are only five known cases in the United States.
Marco's parents are raising money through the Lost Enzyme Project to help fund a treatment for the progressive disease.
CHANDLER, Ariz. - A Chandler family is turning to the community to help with fundraising for their son.
He's one of only five kids in the country battling an ultra-rare genetic disorder.
What they're saying
At first glance, Marco is a curious little boy like most, playing with his toys and cars. What you can't see is an ultra-rare genetic disorder.
He's been diagnosed with called beta-mannosidosis.
"The symptoms vary so much from person to person, but the one thing we know for sure is, this is progressive," Fernando Fernandez, Marco's father, said.
The disorder has only five known cases in the entire United States.
Remarkably, two children diagnosed live just ten minutes apart from each other in Chandler.
Marco was born with hearing loss and has been wearing hearing aids since he was three-months-old. His parents noticed his behavior was off and took him to a specialist who diagnosed him with ADHD and low cognitive function at 6-years-old.
They then learned of his non-curable disorder this past March.
Why you should care
"We need funds to provide, so they can have the treatment they need. There's only five kids, including my son, with this condition in all the United States. It's very, very rare, and they are working on a treatment, but we need the money to pay for it," Melissa Fernandez, his mother, said.
They came across the Lost Enzyme Project, a nonprofit that raises awareness of the rare disease. They're raising $500,000 for a life-saving treatment in development.
Without treatment, the disease can cause progression of blindness and inability to walk. The family says they want to move quickly by spreading the word about the disease.
"I will just put all my effort into helping my son and all the other kids affected by this condition," Fernando said.
What you can do
You can learn more about the Lost Enzyme Project and donate to it by clicking here.
